Ruth Tickner describes how pain ‘crept up on her’ over the course of several years and the blind alleys and frustrations she had to face before beginning to rebuild confidence in her body and faith in her future
Pain crept up on me. I have a significant mobility impairment and a curved spine, but I had only experienced the random aches and pains of walking with an abnormal gait. However, about 5 years ago I had the office winter cough and cold and while I was ill began to notice that my thumb joints had started to hurt. I assumed this would stop once I got better but it didn’t and in fact got worse.
After many months I followed this up with the GP and a physiotherapist and had acupuncture regularly to relieve the symptoms. Looking back it seemed to be from that time onward I began to ‘chase’ short lived inflammation sites around my body. Eventually it settled into stiffness in the lower back which progressed slowly but surely over the next two years into a persistent and increasing pain in my left hip.
I tried physiotherapy and took anti-inflammatory tablets for longer and longer periods of time, which made little difference to the pain, but had troubling side effects. I found it particularly difficult in the morning as it hurt more then and I started to go to bed later and get up earlier to try to keep on top of the discomfort. I felt ever more frantic about my ability to continue normal day to day activities at work and at home. I became over-tired, very grumpy and lost weight.
Each medical appointment and referral process with the GP and hospital took weeks and resulted in hardly any useful information and no positive improvement in my condition. Finally, through contact with an orthopaedic surgeon – a friend of a friend – I was referred to a musculoskeletal specialist. He explained Myofascial Pain Syndrome to me and somehow managed to convince me that I could someday be well again.
It certainly has not been a smooth ride over the last 18 months. I decided that relentlessly keeping going hadn’t helped me in any way and I took extended sick leave from my job – something I had hoped never to have to do. Slowly, over the months, the pain and my absolute terror has subsided and I have regained some confidence in my body and faith in my future.
Thankfully I have managed this with minimal medical procedures and my musculoskeletal doctor has set me a challenge for 2014 – I am to learn to breathe using my diaphragm and not my chest muscles. Shallow breathing, he says, will have contributed to my thumbs hurting in the first place!
My GP has always been supportive but in general I have found interacting with the NHS frustrating. In fairness, I don’t think I was ever sufficiently clear about either the effect of the pain on me or what I would like to see done about it. I am sure I would approach the same situation very differently next time. I understand pain to be a complex condition but I am certain that my experience would have been less distressing and probably resolved more satisfactorily if there were specialist pain consultants available to offer support from an early stage.